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Posted 4/20/2015 9:06 PM (GMT 0)
I have lost all of my friends and family members to this disease. I've spent about a year trying to desperately figure out what's wrong with me. My father has become verbally abusive because he doesn't believe I'm physically sick. I can't work,waiting for ssi,waiting for state medical insurance,currently on his insurance with a mountain of bills I cannot pay due to trying to get away from this illness. How do you deal with the isolation of being in severe pain & alone. I'm not dealing with being sick well without any support though I am increasingly thankful for this forum. You are great ty
Posted 4/21/2015 12:11 AM (GMT 0)
I'm so very sorry, Starlette!

Could you get your Dad (& maybe other family members) to watch a movie?
Under Our Skin (Lyme Disease documentary):​

/www.youtube.com/watch?v=CVzXsKvN2ck
www.hulu.com/watch/268761


Can you get any of them to check out this site?
​So you know someone with Chronic Lyme disease: www.tiredoflyme.com/so-you-have-a-friend-or-family-member-with-chronic-lyme-disease.html#.U3dTc3bbS1t​


Last resort - print this out and leave it where each of them can find it:
​" ​Dear Family of a Lyme Disease patient​"
goo.gl/vujRB6

And know that we are here for you as much as we can be! We really do understand what you are going through as we have generally been through it as well!! I too was not believed for a very long time. It's hard to get through, but you can do it!
Posted 4/21/2015 2:16 AM (GMT 0)
Hi Starlette,

I really feel for you and what you are going through as I went through almost the same thing. I had no support, no one believed me, and I was totally isolated. I went 5 years before I was diagnosed and I was so sick that I would have taken cancer as a diagnosis because I was that desperate. I finally did get a lyme diagnosis through IgeneX but even then I had no support and was totally alone.

The only support I had were my 2 doggies. Then I found a lyme forum and that gave me hope as well as support.

Please use this forum to vent as Traveler stated and if you want to e-mail me, please do so...

I'm really sorry about the way your Dad is treating you. That really stinks. If you live at home is it possible you can stay with a different relative?

Thinking of you,
Denise
Posted 4/21/2015 3:04 AM (GMT 0)
I am sorry that you are going through that. I too have lost most of my friends and family is not as close as they were before. I hope you can work things out with them.
Posted 4/21/2015 12:41 PM (GMT 0)
noone else to live with no. I've tried to have him watch the video he said it's a crazy made up internet video. I've tried to give him prove it's a real disease. Idk anymore.
Posted 4/21/2015 12:50 PM (GMT 0)
Hard for someone who has not had Lyme to understand what you are going through even when they want to understand. I had their support and love, but it was like believing something they couldnt see. Plus over the years I tried to act as normal as possible to be the mom and wife they needed. So at times I really wasn't well at all but appeared to be, after several Ibuprophen to start moving.
But your own dad? That is so sad, he needs to be your strength. Hopefully something will open his eyes to what is really going on in your poor body.
Posted 4/21/2015 1:34 PM (GMT 0)
What if you could show him that it's not an "internet movie", that it was shown in movie theaters back in 2008 when it came out? It's only online now because according to movie standards, it's old.
www.rottentomatoes.com/m/under_our_skin/

And you can make it through this. Once you start to show improvements with Lyme treatments, they will become believers. But for now, we are here to help you through this tough time.

(((((((HUGS)))))))
Posted 4/21/2015 2:02 PM (GMT 0)
Hugs traveler
Posted 4/21/2015 2:04 PM (GMT 0)
smilewinkgrin You'll make it, you have all of us!!!
Posted 4/21/2015 10:50 PM (GMT 0)
I'm sorry your dad isn't understanding. I feel you, it's frustrating. Sorry he's being rude about it.

I think parents sometimes just can't handle it, especially once we're grown up and supposed to be on our own. My mom used to blame me getting not feeling good on the fact that I ate kale. Giggle. Yup mom, that's it - the kale!?!

I've left it up to her to tell the rest of our family as I've moved out west and lost connections with them. She hasn't said a word to anyone. She just uninvited us a family reunion, but it's in conn in the middle of summer so I'll gladly stay away from the ticks.

"Friends" disappeared when the docs thought it was MS. But somehow we were slowly surrounded by other people with lyme, weird how it happened actually - it was very random.

My first year sick was the worst and since I didn't know it was lyme I just did everything else I could to support my body and it did help. I think we're finally coming out of it, still sick, but not as bad and getting better.

It will all get better, little pieces at a time...
Posted 4/22/2015 12:47 AM (GMT 0)
We are here for you, Starlette. xo
Posted 4/22/2015 5:39 PM (GMT 0)
Clara, I'm so sorry about your husband's diagnosis. I hope that he does well.
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